Hodgkin's Survivors/Secondary Breast Cancer

Alrighty.  My sx date is May 9, 12 days from now.  I just had my pre-ops today, and my sx has my disability and leave paperwork all done.  Now all I need to do is actually HAVE the surgery!  LOL  Egad!  I keep thinking, "is this the right thing?"  I mean, I have one little (4mm) tumor on one breast.  I think when I talk to people about it, they are like, "Really??? a BILATERAL mastectomy???"  Then I have to go into explaining risk factors, XRT, family history, and the relief of life long anxiety about recurrence, etc., and then I second guess my decision. It'd be easy to change my mind.  Surgery isn't something I just say "sure" to.  As Hemmingway once quoted, "A coward dies a thousand deaths, a brave but one."  I'm the coward.  :-)  

Hi Ladies,

 I also want to second how wonderful it is to have this forum. I seem to be in the minority because I chose to have a lumpectomy and brachytherapy. It is hard to sit with the fear or recurrence but I feel like this was the right decision for me based on the pathology of the tumor. Of course, I will remain hyper-vigilant as we all do. I am 31 years from my Hodgkins diagnosis, hyper-vigilance is a way of life. 

I am two month from my surgery and 7 weeks from the end of treatment. I feel good, my energy returned, my body still a bit beaten up. 

 I think it is important to say there are other choices besides mastectomy these days. It is all about your personal risk tolerance. I believe the medical profession does too much to push the mastectomies but time will tell if I am misguided on that.

 Love to all of you,

 Deb

I am taking tamoxifen (just started last month).  I still have the expanders for a few more months.  I keep hearing that 10 year life estimate on the implants and I am just hoping that it will at least make it 20 years, because I am tired of surgery.

I was Dx with Hodgkin's in 1989. After going through tx I was never really a sick, never had problems getting pregnant nor did I have complicated pregnancies. I have two kids. Neither were planned they kind of just appeared one day. LOL

I wasn't really informed about my first time around with cancer. My mother was very old school she just told me I was a little sick and that I would be okay and the radiation began. I believe she didn't want to scare me nor admitt that her child was facing a very serious battle. She just wanted to pretend all was well.

I started having mamos after doing my own research as an adult. After three mammos my tumor popped up out of nowhere between mammo. I found it myself in the shower. I decided to be bold and opted for the double-mx for peace of mind. Now my prayer is please GOD this poor girl has been through enough let me be PLEASE.

Sometimes I feel deep inside that my cancer was caused by all the pushing and mushing of my breast during those 3 mammos it woke up those cancer cells and got them going. I am not saying that it would have not happened anyways. Now I am more inclined to say NO to diagnostic tests that require radiation unless it is really needed. When I go to the dentist I just say clean my teeth no photos please and they understand.

I am telling my story to help others who my come along and this is just my opinion ladies. HUGS to us all.

Shelley, as you can see from my signature I had Hodgkins in 98/99. I've been followed very closely by my onc team (partly because I was in a clinical trial) since then. I do NOT have a BC diagnosis but decided on my 30th birthday that I was tired of the testing and opted for a preventative mastectomy. This experience has been very empowering for me. 14 years of mamograms and breast MRIs has felt more invasive than the surgery I had about a month ago. As HL survivors insurance must cover mastectomy and reconstruction just as for women with the BRCA genes. This is what felt right for me. At the very least moving forward with testing will empower you with information and hopefully make this less scary. I hope you find the peace you're looking for. All the best.

Shelley, I spent about a year and a half researching this (watching my own clinical trial and others). There are lots of factors for HD women that affect breast cancer risk (age at time of radiation, dose, fertility, race, and on and on). All things considered, my breast oncologist calculated my risk as being 30%-40% at the low end, and rising for the next several decades. One of the leading causes of death in HD survivors is secondary cancer. We're in an odd spot - the 'cure' rate is so high in HD and yet, there are lots of us suffering from the treatment that we received years ago (I have fatigue, hypothyroidism, osteoperosis and memory issues...at 30!). Treatment options can for secondary cancers can be limited because we may be 'maxed out' on radiation doses or certain types of chemo - survival rates are affected. I am not trying to be an alarmist by any means. My choice was based on many factors; I feel like I've had one aspect of this heavy load lifted off of my shoulders (or chest ha!). 

I'm not trying to be rude but I feel strongly that your gynecologist is misinformed. Most breast oncologists (and HD oncs) feel that HD survivors should get BOTH breast MRI's and mamograms, every year, starting at age 25. (FWIW, I was treated at Stanford by one of the foremost HD oncs in the country, Dr. Michael Link). I see my onc every year for chest x-rays, bone scans, cardiology follow up, thyroid stuff and (formerly) breast health.

Do you have an onc currently? If you like your ob/gyn maybe stick with that Dr. for the stuff they're good at and find a breast onc in your area who is current on recommendations. 

Please let me know if I'm overwhelming you with info.  

I had annual mammograms, but they did not pick up my BC.  I found it myself.  Then when I did go for MRI there were lots of other areas they saw - but they all turned out to be nothing.  So I see what they mean by false positives.  Lifelover - I also remember my RO telling that my risk of breast cancer was very very small, but higher than the average persons.  The study they released in Chicago last weeks showed that of the young girls treated for Hodgkin's - 30% have breast cancer by age 50.  I did not think our risk ever declined for this.

shelleyfl48:  My BC was diagnosed by MRI only.  The mammogram did not catch it until I had the higher resolution mammogram AFTER the MRI spotted the 4mm mass.  I receive the NEJM abstracts only (too expensive for the whole journal) and I was the one who insisted on the MRIs when this became published a few years ago!!  My insurance had to have my MD verify that it was what I needed back then.  

Now, for me, I have a MO appt in a few weeks.  I am s/p BMX 5/9/12 with TE and 2 fills so far.  No radiation tx needed. Since I am also a HL survivor of 37 years, I am very, very cautious about chemo/hormone treatments.  I don't think I'll be a candidate for chemo, as I am post-menopausal, stage I, grade I, 0/2 nodes negative, very high ER+ (300) and PR+(290) HER2-, ki-67 15%, clean margins.  I am certainly within the recommended group for Oncotype dx testing, so I will request that BEFORE any chemo decision is made.  Anyone with similar experience?  Also, anyone know the top MO in Pittsburgh, PA???  I am VERY choosey about my MDs.  

Thanks!!!  Good luck to all!!!   

Thanks lifelover.



I have met a couple of times with an endocrinologist in a late effects clinic. I had heart and lung function tests and both were fine, although I definitely do get out of breath quite easily. My thyroid packed up within months of finishing RT to my neck so I get regular blood tests to check thyroxine levels.



The doctor I saw this week said that the clear mammo and u/s was reassuring but I'm becoming less convinced. Only time will tell I guess...

Hi, Michelle.  I was wondering the same thing.  Most of us seem to have IDC - but that could just mirror the general population.  I am now also getting basal cells in the chest area.  It's funny - About 6 months ago I was just starting to do some research and reading about our risk of BC and how some women were even getting prophylactic BMX's.  A few months later I found my own lump.  I hope this doesn't happen when I start looking into all the heart issues I am now hearing about!

Hello All ~
I am coming to you s a new member needing HELP ... PLEASE!!!  I was diagnosed with Hodgkins Lymphoma in 1984 at the ge of 18.  I was treated with radiation therapy only ... My life time dose.  No recurrent issues until April of 2011 when I was diagnosed with DCIS in my right breast.  After many many prayers and tears, I opted for a Lumpectomy with no radiation being that I cannot have anymore due to receiving my lif-time dose in 1984.  The surgeon did NOT get clean margins so wwe had to go for a 2nd lumpectomy.  This time ... clean margins were reached.  I was to be followed-up every 6 months.

I went December 2011 for follow-up mammogram and there was indeed a spot that was suspicious but the radiologist marked the sheet of paper to say "most probably benign ... follow-up in six months".  Now looking back and knowing my history ... I wished I had demanded further checking at that time ... But, I didn't.

This brings us to now ... June 13 follow-up mammogram #2 ... showed 'abnormal'.  They immediately got more magnified views.  They warranted a core biopsy.  The cor biopsy came back as DCIS again basically in the same area as in 2011.  My breast surgeon and the cancer board discussed my unique case and came to the decision that a mastectomy is highly recommended due to my having a VERY HIGH chance of getting another cancer of the breast and the next time could very easily be a very agressive cancer rather than the DCIS which I have now. 

Of course .. I am terrified and this is by no means what I want but ... feel that the chances are indeed of my getting a very agressive cancer that we could do nothing about.
 
Here is my issue now ... my breast surgeon is not very familiar with us
Hodgkins Survivors and our mantle radiation.  I had HD in 1984 with my lifetime
dose of radiation.  I want THE BEST to do my mastectomy and reconstruction but
HAVE NO CLUE WHO TO GO TO!! My breast surgeon has me in with a Plastic Surgeon
on July 3rd but I hear he is quite young and does not have that much experience
with reconstruction.

I am begging for your alls help as to what you would do????  I have called
several Plastics docs and they do not take insurance only private pay ....
Wonder what amount we are talking??

Have any of you dealt with this exact problem?  I would love to have a
nipple and skin sparing surgery and then have the reconstruction at the same
mastectomy surgersparing or nipple sparing???  Then I wonder .. Is this all going to be an un-Godly amount of surgery time (hours)???

I know that a lot of Hodgkins survivors have gone to follow-up clinics (ex: Dr. Steven
Hancock at Stanford and I think I remember another late effects clinic in
Ohio??  Regardless ... how do i go about finding the PERFECT pair of doctors to
work on me??  I am SO confused and have so much on my plate that I don't even
know which way to turn.

Any and all suggestions and recommendations will be GREATLY appreciated.  I
am 46 years old ... was 18 when I had the HD and radiation.  I am sooo very
scared and don't know what to do ... other than take the high recommendation to
go the double mast. route.  I live in Knoxville, Tennessee ... I would love to
not have to travel BUT if that is what is recommended and have done so
yourselves ... I'm all in.  I just want a good recovery and excellent
reconstructive results.

PLEASE HELP ME ... I AM terrified!!!  Thanks so much and I love you ALL for
being here on this list exactly for these situations!!!  I look SOOO forward
to hearing some responses.
 
HD IIA - 1984
Tachycardia
Asthma
DCIS right breast April 2011
DCIS right breast June 2012

Edited by Mods to remove personal information.

Hi Gaye,  It is hard knowing exactly what to do with our previously radiated skin.  I was advised not to do skin/nipple sparing as my tumor was close to the nipple.  I worried about the long surgery, my clotting history, and my skin with any kind of flap surgery.  I chose the tissue expanders.  Of course, I then worried about how far my skin would stretch with expanders.  I am now "filled up" and the skin looks pretty good.  I will exchange for implants in a few months.  I don't know much about it - but if you could do skin sparing and go straight to implants that would probably not be a long surgery.   You may want to search these boards and read about the center in New Orleans (people seem to love it) if you want to travel and have a tricky reconstruction.  I am 50 and 20 years out from my radiation.